Self-preservation chokes open science, kills the patient

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Arguably the one area that stands to benefit the most from open and shared data is science. Yet researchers are reluctant to do it. Why? Because the reward model for scientific discovery is chaining them to dollars they can't pocket otherwise. In other words, self-preservation dictates they hide and secure their data until they can't milk anything else from it and even then they often leave the raw data forgotten on a hard drive rather than risk releasing it for someone else to profit from.

Nah, you might say, that can't be happening. Yes, it's happening. Read the most excellent "Dude, Where's My Data?" post in PLOS.org for a thorough understanding of how little science data is actually retrievable. I promise this news will make you cry.

On the one hand, science is a noble cause that benefits all of mankind. On the other, it is driven by the individual scientist's need for prestige, credibility and visibility, all of which are essential to securing research funding. It is important to understand this distinction. The majority of scientists are not driven by monetary gain for themselves (although they will gladly accept such!) but by the ever present need to get more research funding and hold onto their jobs. This scenario often leads to scientists relinquishing the rights to their discovery (often along with the rights to the data) to commercial interests which in turn far too often leads to a chokehold on future discoveries and present applications. In short, commercial interests are not generally, or at least not universally, beneficial to society.

Case in point: the patenting of the BRCA1 and BRCA2 genes, mutations of which prelude breast cancer. The discovery was a life-saving breakthrough, but the patenting of it by Myriad Genetics, and subsequent huge patient testing costs and stymied innovations, curtailed its benefit to society at large and to affected patients in particular. The Supreme Court had to step in on the fray and ultimately ruled that the genes, while discovered by the researchers, were not invented by them and therefore could not be patented. The result of that ruling? Open science on breast cancer genes.

"The U.S. Supreme Court's unanimous rejection of patenting human genes is a clear victory for patients that will expand medical discovery and preserve access to innovative diagnosis and treatment options," the American Medical Association (AMA) said in a statement to the press at the time. 

There is an entire industry built around plundering scientific discoveries for commercial gain and future research funding. It begins with the rather innocuous sounding but often insidious university technology transfer programs. To be fair, universities cannot afford to fund researchers or their research themselves. Certainly, they can't raise the money off student tuition that are already too high and stemming the flow of enrolled students. Nor can they milk alumni for the additional funds because that source, even when totally tapped out, doesn't come close to funding a never-ending stream of research projects.

Then there are the various federal regulations governing technology transfer, many of which are tied to the receipt of federal funding for research. Therefore, universities are often encouraged if not compelled to collaborate with commercial interests and to license their discoveries. One such regulation is the Bayh-Dole Act, which had all the best intentions but occasionally has the opposite effect. You can learn more about university technology transfer on the Association of University Technology Managers (AUTM) website and on the presentation download titled "What is Technology Transfer" you'll find on that page. Full disclosure: I co-wrote two books for AUTM and their partners several years ago. I have no ties to them now nor do I feel any need to promote or criticize them in any way.

Kindly allow me to also point you towards a good discussion about the self-preservation problem in open science efforts and a new attempt in breaking that pattern in an article in Fast Company.

The painful truth of the matter is that we have to find a way to fund research and make it all open science rather that closing it off in the proprietary world of commercial interests if we are to ever fully benefit from the knowledge science brings. The question is, will we find the collective will to do that and protect our brightest scientific minds in the process? I sincerely hope we do. - Pam